Forum: Motility Disorders

The combination of the J tube and VSL#3ds seems to be working. NO BELLY PAIN for the last week at least. I mix one dose of miralax and 1 ounce of mag citrate in 24 ounces of water twice a day and just keep it going in at 60 cc an hour 24 hours a day in the J tube. The VSL#3ds seems to of helped the gas, so far I just put it in his g tube. He gets at least 40-48 ounces through g tube Don't know if it is the combo of the two that is working but I am not changing anything for now. I...

We took Eoin in Tuesday night due to the most extreme distension I have seen from him (see pic). They are supposedly going to repeat his anal botox in thinking that the January dose was never effective. Then they want to do another contrast enema to see if he has "toxic colon." He is being really well-behaved this time in the hospital other than the fact that this is the first time he keeps saying he is "hungee" and "needs food and apple juice" poor kid.

Well we finally had to put Mya back on 100% TPN. She just could not handle the formula. The last time we hooked her up to it at 15 mls an hour all she did was cry so we changed it back to the pedialyte and after 48 hours back on it, she started just passing it straight through unabsorbed. You could smell it in her ostomy bag. Plus she lost 2 pounds in 1 week. Not good. Our other issue is her meds started to just sit in her stomach for hours on end so we switched to putting them in through...

I hate this motility stuff! I was talking to GI about the upcoming manometry study in regards to Daniel being sick (we're a go if his lungs are clear), and I figured while I had his ear I'd ask what to do with the Miralax dosage. They had us cut it back 3 weeks ago from 6 grams to 3 grams (I know, tiny doses here) to see if it would thicken his poop - well, it didn't. It made it thinner AND made him go less. So the doctors are like "well, why not stop it entirely if it's just...

my dd saw DR.N and after very little weight gain with the gj tube and still vomitting the previous nite dinner-today we started the process for cisapride this is our last med to try.I just so tire of vomit at 2:00 in the morning, so I hope this helps a little.:)

So, Daniel's scheduled to have the anal-rectal manometry study done next week to get the ball rolling on pinning down some of his motility issues. We've been waiting 3 months for this test. Then last week he ... either aspirated or got a bad cold. His lungs sound awful, and now he has fluid in both ears and they put him on antibiotics as a precaution for aspiration pneumonia and ear infections. He'll finish the antibiotics 3 days before the test is scheduled. Any guesses if this...

Yesterday we drove to Lucile Packard and the boy's saw their new GI. He spoke with us about the boys, looked through the previous GI's notes/tests/ect, and then checked the boy's over. We asked him what he thought was going on and he told us that basically the boy's intestinal muscles do not work right and that he feels that there is some type of Genetic cause. He was glad to see that Matthew is being seen by a geneticist, but wants Hunter to also see the geneticist also. He said that at...

Has anybody ever dealt with this before. Liam has been having stools like this for couple of years now and when I told th GI he said it wasn't an issue since his liver wasn't enlarged? :think_confused: But idk it certainly doesn't seem normal. They are always white or clay colored and will have some streaks of green, like bile green not artificially food coloring green. Just not sue what could be causing this. He does have mild motility issues but nothing like his sister and doesn't regularly...

but sadly don't. When you give an Enama how long would you wait to see if DC makes a BM? Last time they gave him it took 36 hrs.

Claire had to get her Broviac pulled one week ago because of a bad central line infection that wasn't clearing up even on multiple antibiotics. We are now trying to decide if we want to go for a port instead of a Broviac for the new line. She has been TPN dependent for 2 years though she recently went almost an entire month with no TPN right before she got this infection. We are leaning toward a port because it would be really nice if she could bath, swim, etc. when well and because thaving...

The GI dr called today and told me that I need to do an Enama and if it's liquid poop not solid we will need to go to the hospital to be admitted. Carter is getting a Ano-rectal manometry done on 3/16. What can you tell me about the test? Dr wants to wait until this test is done and see the results before he thinks about ordering a colonospy but he says it looks like he wants to do one.

I knew it was to good to be true. Since the J tube going at 60 cc's a hour 24 hours a day with Miralax and mag citrate in each bag so he gets constant doses of each he has been exploding every morning in the toilet. He would have a few very loose diapers during the day and lots of gas problems. Now that we have started the probiotic VSL#3DS things have changed. Yesterday thick poop in the diaper and very small amount in the toilet. This morning NOTHING not even gas for the first time...

I looked up the article and thought others might be interested. I attached it below.

Hi Ladies. Could you please tell me your experience and what you know about Neomycin Sulfate Solution. The GI switched Eoin off of Flagyl due to the prolonged time we have been on it and on to the Neomycin. It is a large dose, 10ml 3x daily. I read the internet stuff about it, and the FDA black box warning sounds scary, but we do need something to help combat Eoin's bacterial overgrowth which adds to his distension with all that gas. Anyone have experience with this med?

Sophie is backed up. She is saying she feels like puking all the time, tummy aches. As of yesterday she was 5 days with no poop. Her DR said to stop her lomotil (med she takes for motility disorder) until her bowels are back to normal. We did 4 oz mag citrate yesterday (in two doeses) and she did have 2 loose stools. Still complaining this AM. We will be giving her sennacort this afternoon. I hate giving her all this stuff though. How do you know when they are cleaned out? When they dont...

he called at 6:45pm to tell me that the X-Ray shows somewhat of a blockage, there is stool in the anus and colon. He told me he faxed the results to the GI Dr, so now we wait. But in the mean time still give him all the meds until other wise.

of miralax,senna, and mineral oil. called the Drs and talked to the nurse and told her they in 14 days he pooped 30x all liquid not 1 solid poop. Tells me she will tell the dr and they will get back to me. Well the dr said that is not good(he should of not pooped that much and it should of not been all liquid) so now he wants us to go and get an X ray done to see if there is a blockage.

I am sorry, but I am really frustrated with this. Devon is back to 4 boxes of formula a day and guess what is back right along with that...the yucky respiratory symptoms! Within 48-72 hours of starting the 4 boxes overnight he had his green, horrifically thick nasal discharge again...lasted two weeks and didn't stop until I took a 3 day hiatus from the tube feedings altogether (I have told his doctors this--for those who may not know, he eats orally in addition to the tube). No tube feeds,...

I got an email from the person in the white lab coat. It's called Froose. It's a box drink that has 3gm of fiber per 4 oz box. She thought it would be something that might work for Austin. She said that it isn't sold around our area, but you can order it on line. Here is a link to it... http://www.froose.com/milton_phase2/index.html I don't really want to order any if it ends up being gross. Not know if other kids drink it, I don't want to waste my money. Austin isn't a juice drinker anyway. ...

Jesse's xray last Thursday showed no poop. He is finally clean out. The J tube seems to be helping he is on it 24 hours a day between 40-60cc's hour. Through trial and error I put one dose of Miralax and 2 ounces of Mag citrate in the full bag of water and it feeds all day at night I refill the bag with another dose of Miralax in a full bag and it runs all night. His bowels showed black everywere which means he is full of gas which is now causing the belly pain. His peds called me Friday...

Hope everyone is well. I'm just here to vent. I thought, where can I vent and people would understand where I'm coming from. ;) I am getting so very frustrated with enemas everyday, but thats how Austin has to poop for now, and it is what it is.....but.....I hate every minute of it. He's 17 months old as of yesterday and for the most part every diaper change at this age can be a WWF event. Everytime he see's me with the enema bag in my hand he starts to cry. Even if I'm just moving it from...